On the good times

By 15th January 2018 January 25th, 2018 No Comments

You guys. I know my posts have been light over the Christmas break. Part of that is because Mikaere is doing so well.


So well, he’s having seizure free days (touch all the superstitious wood, what a miracle).

We don’t know why this is exactly. I wish we did. Mostly we speculate. It could be his meds are perfect. It could be he’s not ill and he’s had time to relax and now his body is managing his NKH systems rather than an infection or other kind of bodily stress. It could be anything.

The big thing is the knock on effect this has. Mikaere is awake and aware. His vision is improving, with him proper focusing and following on objects, even ones that don’t make noise!

He’s vocalising. Laughing and chatting and crying, protesting, using his voice (!!) to indicate how he’s feeling!

He’s eating orally. Like a champ. Not all his feeds but a ginormous portion of them. He shows likes and dislikes, too. Custard is in. Beef and vege he’s not 100% about. Broccoli is a big fat no go.

He’s more aware of his body, a lot more wriggling, and dare I even say it, for a second or two he can even hold his head up. I’ll take those seconds as a win. I’m positively delighted that’s even a possibility.

He’s even been able to move back into his own crib, and we’re even able to (very tentatively) trust the baby monitor and be in another room (!!!) while he’s sleeping. Oh my days, being in another room while he’s sleeping and only watching the baby monitor feels positively insane. Crazy. (We’re wild parents, look at us go!)

Mikaere is doing WELL.

Here’s the flip side. We’re on a peak at the minute. A glorious glorious peak where Mikaere smiles (!!) and we’re all beyond delighted with his progress, because there IS progress. He’s developing (!!). Thriving(!!!!). Times are good! (!!!!!!!!!)

But we know that everything comes in waves and I’m on edge waiting for everything to slide down into that trough. Waiting for the downslide has me tense. And worried and watching every small move like a hawk, wondering if this is it. Every time we do something I wonder if it will cause that downslide.

I’m enjoying the blue skies that come with this peak, but in a very tense waiting-for-the-next-thing kind of a way. It’s hard to relax into the good times. Hey ho. I’m more than happy to keep practicing 🙂

So, our little baby guy is doing so well. Long may it last!

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